Corresponding with a new friend, I expressed a few thoughts that might be worth sharing here:

>>When I am fishing, or spending time with one of my sons, or driving, or exercising, or working on the computer, or reading, or … you get where I’m going with this … when I am doing all the things that make being alive worthwhile, the LAST thing I am thinking about is eating (or in my case, not eating). My body needs nutrition in order to perform life’s functions. What difference does it really make how I get that nutrition? I stick my tube into my button, wait for the food and water to flow into my stomach, pull out the tube, close off my button, and get back to living.

I try not to let my life (or the life of those who love me) become focused upon how I eat. What do sick people with anorexia, bulimia, binge-eating, etc. have in common? Each has an unhealthy focus upon eating.

The people in my life see that the way I eat is only that: the way I eat. My tube is a utensil, like a cup, or a plate, or a spoon. Life is short. None of us have time to worry about my feeding tube.<<

Haven’t updated for some time… But a new development is worth mentioning.

As you may recall, my disorder prevents me from swallowing. My nutrition/hydration solution is my P.E.G. and I am quite healthy overall: I exercise regularly, volunteer in my community and live an ordinary life – except for that part about not being able to swallow.

I’ve mentioned in this space how much I miss eating. Breaking it down, eating is:

smelling food

chewing food

tasting food

swallowing food

digesting food

So, I got to thinking…

my sense of smell still works

I can chew

my sense of taste still works

I digest my Jevity 1.5 food very well

The only conflict? I can do everything involved with eating, except swallowing. Okay, this is the sorta gross part: After smelling, chewing, and tasting what happens to the food (a bite of takeout Zaxby’s chicken fingers tonight, for example)? Simple. Every bit of that bite of Zaxby’s chicken is still in my mouth. I simply spit it out.

That is not something I do in a hoyty-toyty restaurant; it’s absolutely an ‘excuse me a moment please’ activity to be done in private. But in just a moment (after rinsing out my mouth) I can come back to the table and start my P.E.G. feeding while others continue to enjoy their meal. I’m still smelling the food and there’s even a bit of residual taste.

We enjoyed our second travel experience since beginning life on a P.E. G. All went very well indeed!

We drove from Brighton IL to Tupelo MS and on to New Orleans LA — and back the same route — to visit my brother and some wonderful OLEY friends.

At home, I’ve kept a rigid feeding schedule to maintain my weight and make a full recovery from aspiration pneumonia.

On the road, I found that time got away from me a few times — I would look at the clock and find myself an hour past my regular feeding time. I’m glad to say I was able to adjust, just like I would if I were a ‘mouth feeder’. I simply had half a can less of Jevity or even skipped a can if it would make me bloated on my next feeding.

I was careful, though, to always get all of my water — even if I was late! Missing a can of Jevity — here or there — is no different than ‘mouth feeders’ changing their diet to accommodate their travel schedule. But for us PEGgers, never, never, never skip hydration. I may be two hours off schedule but I will get my water and meds!

As long as my day includes the full component of hydration, I can make due in the short term by altering my Jevity intake. Wow, I feel like a ‘regular’ guy — Living (not just surviving) On A P.E.G.!!

It’s been well over a year and I promised my Dr. I’d get tested again for swallowing. I cheated and tried drinking about 5 ml of water the day before and felt like I was drowning — so I had no hope at all.

So, they stood me sideways at the x-ray machine. Then they gave me a plastic spoonful of white pudding. Tasted pretty good. I swallowed… and swallowed… and swallowed…

Nada! Zip! Bupkiss! The pudding got as far as the base of my tongue and just sat there.

The people at St John’s Hospital’s Infusion Center have been doing a great job of keeping me alive. They supply all the information, training, equipment and supplies I need to make it through each day.

I have purchased several of my ‘Living on a PEG‘ paperbacks. It is my intention to deliver those books to the Infusion Center so they can give them away to new patients who would like to know what the Enteral Nutrition experience is going to be like.

Home Infusion

The Home Infusion Program at St. John’s Hospital provides quality, comprehensive home infusion therapies to patients of all ages. To provide continuity from the hospital or office throughout therapy, product delivery and patient education is coordinated by a registered nurse.

• Enteral nutrition/Tube feedings

• Total parenteral nutrition (TPN)

Getting ready

Patients may feel a little apprehensive about managing treatment at home, which is a normal reaction. We understand these feelings and help with preparation for therapy at home.

• The patient and/or a member of the household is trained to perform procedures involved in care.
• Prescription and supply needs are determined.
• Supplies, materials and prescriptions are delivered to the home.